The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

Saturday, June 20, 2009

Dr. Enlander to represent Ireland in European Think Tank

Dara Gantly talks to Dr Derek Enlander — a Belfast-born doctor who specialises in the diagnosis and treatment of myalgic encepalomyelitis (ME)— also known as chronic fatigue syndrome — in his New York practice.

It was two decades ago, on a return visit to his native Belfast, that Dr Derek Enlander formed what was to become a lasting interest in myalgicencephalomyelitis (ME). Now often diagnosed under the name Chronic Fatigue Syndrome (CFS), ME is a potentially disabling and chronic illness, affecting the brain, muscles and immune system that can cause profound exhaustion, pain and mental confusion.

Having graduated from the RCSI in 1963 and trained at the Meath Hospital, Dr Enlander left for Stanford University in California in 1966 under afellowship scheme, initially for just one year, researching the Epstein-Barr virus. He has lived and worked in the US ever since.

Childhood friend

During one of his return visits to Northern Ireland, Dr Enlander was asked by a childhood friend to help him in the then little-known condition, ME [Dr Melvin Ramsay at the Royal Free Hospital in London had written the seminal text on the condition in the mid-1950s], which had caused his friend to curtail his successful estate agency business. “My school friend in Belfast said to me that when I went back to America, I had to find out about this disease so that I could help him. That formed my interest. This was 18 to 19 years ago,” recalled Dr Enlander.

His practice in New York is now devoted to ME/CFS and fibromyalgia, and he is a recognised expert in the field across the globe.

Dr Enlander has not quite lost his Belfast accent, and continues his professional relationship with Ireland in a number of ways. In fact, he has been chosen as the Irish representative on a new European Think Tank for ME,which held its first meeting last weekend (June 13) in Norway.

Set up by a new organisation called the European Society for ME, the ThinkTank wants to promote cooperation among scientists to stimulate new research.The 10-member group wants to initiate an effective research effort to find the secret behind the somewhat mysterious disease. Doctors and scientists are still confused over what causes ME, which is estimated to affect around 12,000 people in Ireland. While the exact cause remains unknown, most patients experience a flu-like illness before onset.

Uncertainty

This uncertainty has only added to the controversy surround ME, as patients often look well and have normal bloods returned when tested. “The doctor is [often] skeptical and believes the patient must be imagining that they are sick. The idea that they can’t work is because they are lazy or they are neurotic, and they are given this label of a psychiatric neurosis,” explained Dr Enlander.“But this is not a psychiatric disease. This is a physical disease,” he stressed. “It has been shown that there is a dysfunction of the immune system, and it is this dysfunction that people are now actually focusing on for treatment.”

Dr Enlander is highly critical of psychiatrists who believe graded exercise therapy and cognitive therapy can be effective treatment. “We have found that graded exercise therapy can actually be detrimental to the patient’s progress; it can actually produce relapse. Yet this is proclaimed by several psychiatric experts to be the only mode of treatment,” he told *IMT*.“This is very, very damaging. The idea of labelling these patients as ‘psychiatric’ is very problematic, because it produces greater stress, and stress produces relapse.”

ME has been around for centuries, and it is thought both Florence Nightingale and Charles Darwin suffered from it, after they returned from the Crimea and Galápagos respectively.

Neurasthenia

It has had many names, including neurasthenia (1800s), post-viral fatigue syndrome (PVFS), and Royal Free Disease — a major outbreak occurred in London’s Royal Free Hospital in 1955. ME used to occur in mini-epidemics,but since 1956 it is more usually seen in isolated cases.

A newer name is Chronic Fatigue Syndrome. However, it only describes fatigue and CFS can be confused with chronic tiredness, ‘burn-out’ and depression.

While Dr Enlander prefers the term ME, he believes there is really no ideal term for the disease.“You can poke holes into any term. Chronic Fatigue Syndrome unfortunately was coined in America and the term creates great skepticism. Doctors don’t understand the disease. Then it was given the pseudonym of ‘yuppie disease’ in the popular press, which added to the problem.”

No cure for ME

Dr Enlander was due to give a talk, organised by the Irish ME/CFS Association, on the ‘Current treatment of ME/CFS’ at the Mount Herbert Hotel, Herbert Road, Dublin this Thursday, June 18. At present there is no cure for ME, and no specific diagnostic test. Diagnosis is made from recognising the main symptoms and ruling out of other illnesses. However, most patients have had positive exposure to one of a number of viruses, such as Human Herpes virus 6 (HHV-6), which can produce ill effect in the immune system. “We are particularly interested in the immune system dysfunction. That is what we are treating, to some good effect. But there is no 100 per cent effective method of treatment,” said Dr Enlander, ahead of the Dublin talk.

His clinic in Manhattan has devised a protocol based on what is called the ‘Methylation Cycle’, which Dr Enlander believes is defective in this disease. “The protocol that we use actually is IMMUNOPROP and IMMUNOPlus capsules and Hepapressin (generic Kutapressin) injection – immune system modulators. “We are also looking at hyperbaric oxygen treatment, but this is at a very early stage,” he added, explaining that the thinking behind this was that if you increase the oxygenation the patient will feel better.

A diagnostic test

His latest work involves a diagnostic test using hydrogen sulphide.“Hydrogen sulphide is not the specific test for this disease, but it is an indicator of an abnormality.”

Author of The CFS Handbook, Dr Enlander has recently been appointed editor of a new medical journal, Fatigue, which plans to start publishing early next year. This, along with the formation of the new European Think Tank, should help promote a greater understanding of the disease.

Last year’s winner of the Nobel Prize in Medicine, Prof Luc Montagnier of France, one of the discoverers of the HIV-virus, is a supporter of the Think Tank, but was unable to join the first meeting in Norway.“Scientists have already uncovered a lot about ME, but this information doesnot reach professional healthcare personnel, and the disease is still not taken seriously,” he commented. “It is about time this changed.”

Contains: Belfast-born Dr Derek Enlander has been chosen as the Irishrepresentative on a new European Think Tank for ME ... The 10-member groupwants to initiate an effective research effort to find the secret behind thesomewhat mysterious disease. "The doctor is [often] skeptical and believes the patient must be imagining that they are sick. The idea that they can't work is because they are lazy or they are neurotic ... "But this is not a psychiatric disease. This is a physical disease," he stressed. "It has been shown that there is a dysfunction of the immune system, and it is this dysfunction that people are now actually focusing on for treatment." ... DrEnlander is highly critical of psychiatrists who believe graded exercisetherapy and cognitive therapy can be effective treatment. "We have foundthat graded exercise therapy can actually be detrimental to the patient'sprogress ... most patients have had positive exposure to one of a number ofviruses, such as Human Herpes virus 6 ... His clinic in Manhattan hasdevised a protocol based on what is called the 'Methylation Cycle' ...latest work involves a diagnostic test using hydrogen sulphide. "Hydrogensulphide is not the specific test for this disease, but it is an indicatorof an abnormality." ... "Scientists have already uncovered a lot about ME, but this information does not reach professional health care personnel, and the disease is still not taken seriously," he commented. "It is about time this changed."

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